Rachel’s Story – Gastroparesis

Tell us a little about yourself

“I’m Rachel and I’m 35. I live in West Sussex and work as an executive assistant in nursing. I have worked in healthcare for over 18 years. I have a son, Vinnie, who is nearly five years old. He has autism and knows about my condition. I believe in raising him to be educated about all our differences as people, including health conditions. He knows that sometimes, for example, Mummy can’t eat like him because of gastroparesis.”

When did your gastroparesis symptoms begin?

“My gastroparesis symptoms began at around 18 years old. I experienced episodes of being sick and thought I had stomach flu, but being sick continued for over a year and I lost weight. I was desperate for answers. I began researching online and found a girl to speak to with similar symptoms. As I was talking to her, I soon realised how much I related to her symptoms, and this prompted me to seek medical help.

I saw several gastroenterologists (doctors who specialise in conditions of the digestive system) before being transferred to a specialist within gut motility (the rate and ease at which our food moves through our digestive tract).”

What tests did you have?

“I had numerous tests, such as a GES (gastric emptying scintigraphy) to see how my stomach was emptying and a PH manometry test (this is where a thin tube is placed in your throat to measure acid reflux which is the liquid from your stomach moving into your oesophagus). The results showed that my stomach wasn’t working properly.”

When did you receive your gastroparesis diagnosis?

“It took me four years to get a diagnosis, all in all. When I finally received my gastroparesis diagnosis, I felt mixed emotions. On one hand, I felt such a relief to know that four years of trying to convince doctors that my daily “normal” wasn’t right, in just ten-minute appointment slots, had paid off. I finally felt heard.

On the other hand, I felt a wave of sadness. I knew my life would never be the same. Over time, I had to process grief. Grief for the healthy body I once knew but was now a long-lost friend.”

How did you feel to receive your diagnosis?

“My family and loved ones supported me throughout, and we’ve tackled every obstacle together. When I received my diagnosis in my early twenties, gastroparesis was even more unheard of back then. I lacked support medically.

Doctors would frequently tell me to drink prescribed supplements and “just go to A & E” if I was worried. There wasn’t enough medical knowledge about gastroparesis to know how to treat me.”

How have you been supported in your gastroparesis journey?

“Because I’ve had so little support medically, I’ve had to learn how to manage my condition and come up with plans for days where I don’t feel so good. Researching my condition has helped me to feel more in control but it’s such a fine balance. Something so small, like a teaspoon of food, could be enough to make me ill.

It’s taken me a lot to get to where I am now. I see an intestinal failure specialist and also have a dietitian who helps me to manage my condition closely. In my daily life, I now know more of my body’s limits with gastroparesis. I’ve got to stick to a very strict diet and manage my stress as much as I can. The job I have now in nursing is lovely because I still impact people’s lives and their care, but it has less impact on my condition.”

How does gastroparesis affect you in your daily life?

“I am trying to give my gastroparesis a hard time surviving in my body, not the other way around. It’s hard but I’m determined.

It’s difficult when food feels like poison and it’s everywhere. When I socialise, I don’t have a drink. Food is such a pivotal part of our lives and is seen as a good thing to so many people, but it makes me sick. Every time I do eat, I worry that it’s going to make me vomit. On my bad days, I do wish I could go out for lunch with my loved ones or go for a coffee with a friend. Food is everywhere and this never really occurs to you until you’re unable to eat. However, I want to exhaust every option available to me before I need to move on to artificial nutrition (tube feeding or receiving feed into a vein).”

How are you doing now?

“Gastroparesis exists. It’s so hidden and silent, but it doesn’t change how large its impact can be. The severity is different for everyone, and nobody is the same. I want professionals too to be more aware.”

Why are you sharing your story today?

“To increase awareness and spark vital conversations. Just because someone looks alright, it doesn’t mean that’s the reality. How someone looks and how someone’s insides are can be two completely different things.

Gastroparesis needs to be significantly more well-known. Like conditions such as diabetes or inflammatory bowel disease (IBD). I want my story to be a beacon of hope. I don’t want anyone to feel as alone as I did while suffering from this and having to research how to navigate a life of ongoing learning to survive with it. You’re not alone and there is a life with gastroparesis, even if it’s not always straightforward.

If you’re looking for support, connections, or just a friendly face, please find me on my Instagram. I’d love for people to know that I’m here if anyone wants to reach out for help.”

“We’re getting to grips with guts”

Guts UK is the charity for the digestive system from top to tail. Our guts have been underfunded, misunderstood and undervalued for decades.

We’re proud to have funded stem cell research into achalasia and gastroparesis. With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Guts UK’s research leads to earlier diagnoses, kinder treatments and ultimately, a cure.

Help the UK get to grips with guts by donating today.